Survey in Europe – Measuring Quality of Life

London School of Economics Survey about how quality of life is measured and reported in Health Technology Assessments (HTA)

28/05/15

Another survey for patients and carers to take part.

HTA organisations, such as for example NICE (National Institute for Clinical Health and Excellence) mostly use a questionnaire called the EQ-5D to measure the impact of an illness. From our experience with MDS patients, we have found this EQ-5D questionnaire inadequate to reflect the various issues faced by our group of patients. This survey is an opportunity to test and evaluate this widely used questionnaire.
We therefore welcome this survey and project – and encourage you to take part – both patients and caregivers/carers.
Thank you.

Here is the official invitation, background and links to the survey:

The London School of Economics (LSE) is leading an EU-funded research project, Advance-HTA, looking at aspects of health technology assessment (a method used to determine where and how new treatments should be introduced into a national healthcare system). The goal is to work with a range of stakeholders to explore how the methods used in HTA can be improved to better meet the needs of both patients and modern healthcare systems. There are 13 institutions involved in the research from a number of EU countries and North America.

One area of particular interest is the way in which patients’ experience in quality of life is measured. Currently, a tool called EQ-5D-5L is used but there is considerable discussion about how well this reflects the aspects of health-related quality of life that matter to people living with an illness.

We are asking patients with a range of illnesses, from a number of countries, to complete a short questionnaire aimed at finding out ‘Does EQ-5D-5L accurately and reliably reflect the aspects of their health that matter most to patients?’. This is important because it will help ensure that the things that matter to patients are at the heart of future decisions about access to medicines.

FOR CAREGIVERS
Another version of the questionnaire has been developed to capture the responses of the caregivers who are providing support and care for patients. If you know any family members and friends who are caring for a patient, please provide them with the following link to complete the questionnaire: https://lse.qualtrics.com/SE/?SID=SV_9sM3VwpFLDT1xVH

Each questionnaire must be completed in one sitting and all responses are anonymous.

If you are involved in a patient organisation, please consider posting the links to the surveys on your organisation’s website. If you know other patient organisations in Europe, please do forward them the links. The more completed questionnaires we receive, the more reliable the results will be.

Thank you very much for taking the time to complete the questionnaire and support this important piece of research. More information about the project and the institutions involved can be found athttp://www.advance-hta.eu.

19th Congress of the European Haematology Association (EHA) has taken place this year between 12th and 15th June in Milan, Italy.

This event is set up for physicians and representatives of patient support groups to promote excellence in patient care, research and education in haematology.

As part of the Worldwide Alliance of national MDS Patient support and advocacy groups, MDS UK representative – Sophie Wintrich – attended this event to better serve the MDS patient and caregiver community.
We have provided below a brief summary of the Patient Advocacy Track and activities.
As usual, interesting MDS clinical news and updates will be provided separately and posted on our website, Facebook and our Newsletter 6.
This year Dr Wendy Ingram in Cardiff kindly agreed to write up on MDS News at EHA.

This year for the first time, the EHA congress program is complemented by a dedicated Advocacy Track. This track combines all patient and policy related sessions into one, comprehensive yet very diverse program for those interested in advocacy in haematology, patient advocacy and other related topics; and will involve:

EHA Patient Advocacy Booth (booth #206)

This is a central meeting place of all patient advocates and their peers

Patient Advocates Meeting (FRI 11:30-12:30, Room Yellow),

This is a meeting for all patient advocates in order to strengthen collaboration and links between our patient advocacy groups

This session will outline how patients can be involved as partners in clinical research and how the challenges of informed consent, trial results, and ethics in bio banking can be turned into opportunities.
EHA19 Chair Comments – Part 1 – Generics in Hamatology: The doctors’ and patients’ perspective
Jan Geissler

Old people’s diseases in young patients with chronic rare anaemias, Sexuality, fertility, family planning in haematological diseases.

ESH-EHA Joint Symposium “What do you mean, he can’t have the treatment? An interactive session for haematologists and patients” (Sat 11.45-12.45, Amber 5+6 SW2)

This renowned interactive EHA/ESH Joint Symposium will deal with how to explain to a patient that he/she can no longer receive treatment that is endorsed by national guidelines as her/his best option, or, in short: ‘what do you mean, I can’t have the treatment’?

This interactive role playing session showed the importance of doctor patient communication in consultation – as well as patient – family interaction. MDS UK gets many calls from patients who don’t feel comfortable asking too many questions, or requesting an additional opinion from an MDS expert at a Centre of Excellence. Doctor patient communication is sometimes not easy for either party, especially when it comes to difficult diagnosis – but it can be improved.

This EHA/ASH Joint Symposium will present a transnational view on the effects of the financial and economic crises, happening against a backdrop of an ageing population and an increasing prevalence of non-communicable diseases that weighs down heavily on health care budgets.
This was a really interesting session, inviting Prof JL Harousseau (ICO, France) and R Bergstroem, (EFPIA), to discuss the reasons why drug prices are so high.
Prof Harousseau is professor of haematology at the University of Nantes, France and Chairman of the French National Authority for Health (HAS). HAS can be compared to NICE, but operates more independently from Government. He was questioning why more can’t be done to lower prices by using drug volumes. He also asked why drug prices are identical, whatever the added benefit.
R Bergstroem is head of EFPIA: The European Federation of Pharmaceutical Industries and Associations represents the pharmaceutical industry operating in Europe.
He argued that Research and Development costs of past and future drugs need to be paid for, and that industry researchers are entitled to become millionaires or multi-millionaires (sic) should their drugs be effective and successfull. Marketing of those drugs also needs to be paid for.

We thought that the questions were extremely good ones, but sadly, the head of EFPIA failed to raise to the challenge to answer them in a tone and professionalism this EHA audience of doctors and patient advocates expected. Very disappointing.
The topic of drug prices is a truly difficult one – and will require a lot more flexibility from all involved to make innovative drugs available.

This is EHA’s own advocacy session highlighting EHA’s advocacy work and illustrating the importance of politics by the case of personalised medicine.

Scientific Working Group on Quality of Life (Thurs 18.30-20.00)

We welcome the addition of the Advocacy Track to the EHA congress programme and encourage our members to access the webcasts of the relevant sessions, which will be freely available to all on EHA website.

We will also post them on our website – when they become available – and open them up for comments on our on-line discussion forum.

20/06/14
We just added some photos of the EHA congress and the very successful Patient Advocacy Track, attended by many physicians and patient advocates from all over the world.

We thank the EHA Board again for their continued support, partnership and cooperation with patient advocates and look forward to EHA 2015, with some exciting new themes for the now very well established EHA Patient Advocacy Track.
We also congratulate this year’s EHA President Dr Christine Chomienne and all of the EHA teams and contributors for the most successful EHA congress to date – with an amazing 10.400 attendees.
And many thanks to patient advocate Jan Geissler from EUPATI and CML Advocates, for being such a strong and passionate spokesperson for all patient advocacy issues.
Finally thank you to all patient support group representatives and colleagues who attended EHA this year, helped man our patient advocacy booth, answered physician queries and requests and contributed to all patient advocacy sessions.
We hope to see many more of you at EHA 2015 in Vienna!